Twenty years of MS – a voice of experience

Multiple Sclerosis. MS. Doesn’t matter what you call it, I’ve had it for 20 years.

I’ve had rough patches but I’m still hanging in there. Still walking, often with a stiff leg but you get to learn that those things just don’t matter – as long as you’re walking everything is just fine and dandy!

I actually wrote this article some time around 2014, and I’ve come across it again this morning. So, below, is a rewritten version of the earlier article. I don’t know why I’m telling you that but hey I’ve got MS, anything can happen!

If you are newly diagnosed I hope it helps you to understand a little better – feel free to comment or ask questions, and thanks a bunch for reading.

You’re not alone

There are squillions of people around this big wide world who’ve been diagnosed with multiple sclerosis (MS). Ok, maybe ‘squillions’ is an over-exaggeration, but there are more than you probably realise right now.

So why do I think I know anything anyway?

After 20 years, and having reached the Secondary Progressive stage I do think I can safely call myself an expert on this diabolical disease.

And so I say ‘welcome’, not being gnarly, just ‘welcome’ – you’re gonna be ok, ok?

The sneaky genius of an MS diagnosis

We people with multiple sclerosis are terrific at keeping secrets.

I have always thought MS was a stupid disease, the way it comes and goes. Anyway.

In a typical case, once a person is over their first MS episode, and recovered from the first awful taste of disability – then is when you will see absolute brilliance. With a sprinkling of scullduggery. Because MS (usually) is diagnosed at the “Relapsing Remitting” stage. It comes, and it goes. Just like that. It literally smacks you in the head, deposits a few scars on your brain, then takes off. Zoom. Just like that.

Well, it pretends that it’s not there.

And the person who got the smack in the head carries on like nothing happened. With maybe some left-over pins and needles, or feeling a bit numb here and there, or maybe a little blind spot in their vision, any number of little things can be left behind, and sometimes it seems like it’s completely gone. The person with MS thinks they’ve escaped. Or been given the wrong diagnosis. Excellent. Silly doctors, what do they know? But maybe not? We learn that that’s what happens in a lot of cases. So we’re a bit unsure, but still in a state of glorious denial.

Our mission, and we choose to accept it

And so we pretend. We trick you. We lie. With the best intentions. We’re not convinced that we truly have multiple sclerosis, yet. And we don’t want to make you feel bad or anything like that.

So what if we have to hold on to the rail when we walk up or down the stairs? We’ll laugh, we’ll say ‘don’t mind me, you go ahead, old age is getting to me,’ haha. And you’ll think that we are so funny, old age indeed, goodness she/he’s a scream isn’t she/he. Haha.

We’re not telling you. Even when we do know that we truly do have this thing they call MS.

And so, if and when we can / because we can, we hide it.

We become masters of deception. If you’re not super-close family, we won’t tell you, if we can get away with keeping schtum we will – MS is shared on a strictly ‘need to know’ basis. I did it for 16 years. If you are new to your MS diagnosis, consider that a challenge … how long will you hide it for? And p.s., you’ll be okay, honest. I know it looks bad from where you are right now, but from where I am I’ve learnt that it can be okay, even though this all may sound otherwise (just trust me, it’s okay).

And then my legs gave me away. Can’t hide the fact that I walk slow and often with a limp, no hiding now. Dammit.

Seems to happen suddenly to most of us, too, this progression.

Sticks, and stones

So, when mobility becomes an issue, we have a whole new world to get comfortable with. The world of walking sticks and assorted walking aids, the world of having to think hard every time we want to go anywhere, is it easy to get around, do they have disabled access, how far is it from here to there, how will we get there, and when we get there will we be able to do whatever it is we’re there for anyway?

It’s taken me months to get used to carrying a walking stick in public, but I’m ok with it. I think. A case of having to. But I am that far at least. Nobody tells you that it takes getting used to, that it’s not easy having to carry a stick everywhere. There’s no beginners course for that, you’re on your own. I’m learning though, despite some close calls I haven’t injured anybody yet. Just myself. Doing well really.

Uh oh …

And then you start to have the odd fall. You seem to be able to trip over the smallest thing. Your foot (usually just one of them, thank heavens) starts being decidedly uncooperative, and droopy, and you can be sure you’ll realise this is a problem just when you need to walk down that bumpy, stony, higgledy piggledy path – and you realise you hadn’t ever noticed how rocky it was before. And you learn, after a couple of falls and maybe a sprained ankle or two, to take a lot more notice of where your feet are.

Exit … Stage Right?

From my experience, having MS progress to the next stage was truly like having the initial diagnosis all over again – a time of outright shock, how could this happen? All that stuff. Real disability staring me fair in the face. Then again, it might not be so bad, might stay the same for years yet, walking was still possible, within limits but that was ok. Same as always really, nobody knows, so just hang on tight and do what you can with what you have. That’s where it goes. That’s where a huge number of us land.

And on this voyage with MS, we learn a lot. A LOT. About life. About people. About what is and what isn’t important. And it’s ok. We are ok. You are going to be ok. There are so many stages to the progress of this disease that no-one can tell you everything about them, no-one can prepare you for them, but you will go through them all, and survive them all – and yes, grow stronger through having experienced them all.

There are thousands of us, from every corner of the world, each with our own story, each of us tackling a different stage and each of us growing stronger without even knowing it.

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3 thoughts on “Twenty years of MS – a voice of experience”

Thank you for sharing! This was a fantastic post! I have been living with MS for almost 17 years and had my ups and downs, but I believe in never giving up. I did feel so alone for so long, but this blog has given me great connections with SO many. I look forward to reading more of your posts and hope that if you look at my site it will be interesting! Take care and have a great day!!